Wednesday, November 26, 2014


It has been a while since I have put out an update.  The doctors have all ordered an IVIG treatment for Ben but since the first time the order was submitted to Anthem-Blue Cross it was denied.   It took quite a while before they got back to us that it had been denied.  That was October 1st, 2014.  Time waisted.  There was a mistake on that form so we understood and the doctors submitted a new form.  That request was sat on for one reason or another and then they integrated treatments that had been for his father into Ben's file (I just wonder how THAT happened!!)  And, of course, that was denied. When Anthem-Blue Cross were told that they had Ben's dads medication on Ben's chart, they didn't correct it, just started a delay and ignore strategy.  Requests kept getting denied and denied.  Ben's dad was keeping his company, LAM Research, informed about all the denials and his mom was copying the HR department on correspondence between Anthem-Blue Cross and Stanford PANS clinic and her.  One of the sticking points was the word PANDAS.....there is a whole history with that!

Finally, after all this time, (From Oct 1, 2014 till today) , Cathy got a call this morning!  Anthem-Blue Cross told her that the treatment was denied AGAIN, BUT that LAM Research's HR department over-ruled Anthem-Blue Cross and ok'ed the treatment request!!!!!  I have never heard of a company being able to do that, I think it kind of went like "if you don't ok this treatment, we are changing insurance companies next time around and Anthem-Blue Cross will not be one of our selections".

Thank you, thank you, LAM RESEARCH HR DEPARTMENT!

So, now, to actually do the IVIG.  Ben's doctors have arranged for him to have it done at home. That in itself will make things easier for the family.  Otherwise, he would have to go to Stanford Children's Hospital and the commute isn't pretty (even though they are fairly close), and just the whole hospital thing would put extra stress on the family.  After the treatment Ben will most likely have a very bad headache afterwards and we are all just praying that he will be able to get through it as easily as possible and it really kicks this PANDAS thing.

Since July or August he has been on daily doses of antibiotics which has made changes in him.  Usually in the Fall he starts getting all those colds, etc. once school starts.  Then the PANDAS really
gets going and he is totally really bad off till around March or later.  The antibiotics has seemed to keep the illnesses away and he has been the best I can remember in years.  Rather wonderful things have been showing through.  Normally he is pretty much "out of it" most of the time.  He is pacing, has vocal tics, OCD and just not there.  Since his body is not bombarded with all the stuff the antibiotics are keeping away, Ben is starting to show through.  It is so hard to describe how much little things make such a difference to us.  He actually will start a conversation and stick with the for a while. And he is showing humor and playing jokes, something he hasn't done for so long.  These thing happen just once in a great while but to us it is like we are re-discovering Ben again.  He is now so grown up it will be so interesting to find out what he is like as a teenager!  He has missed so much of his life with this stuff and we want him back!

Please keep him in your thoughts.

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